Tuesday, February 13, 2007

The Day in the Sun

The school buses were lined up one after another, so many that I couldn’t even count. It looked like one giant yellow caterpillar against the hot black pavement as the buses meandered around the recreation center. I sat near the pool waiting to see if I could catch a glimpse of Dear Son getting off the bus but there were so many children, that I have to admit, even as his mother, I couldn’t distinguish him from the crowd. The children in the pool were splashing, making it difficult to hear as well. I waited, as child after child got off the bus in their wheelchair, so they could swim.

This was no ordinary day at the pool. This was summer school. Summer school, in this area, consists mainly of swimming every day, along with some other activities, all designed to keep up their skills that they worked on so hard during the school year, so they didn’t lose it for the twelve weeks they were off during the summer.

The short yellow buses were lined up as far as I could see. There were all kinds of wheelchairs for all kinds of kids. There were kids as young as three up through high school. The sight of all of these wheelchairs, made me tear up. Never have I seen so many disabled children, in one spot. I couldn’t help but think that life wasn’t fair for these kids and how they were all on the wrong side of outcomes. Those tiny percentages loomed large here.

The summer school program had many volunteers; college students majoring in special education, make up the bulk of them. There were some older aides as well, that help with the children.

I couldn’t help but think that children with severe disabilities and water don’t mix. After all, it’s difficult to manage these children normally, let alone when they are slippery and wet and can’t help you. But I didn’t have to help today. It was parent visitation day at the pool and I could just relax. Instead, Dear Son had three aides that would get him in the water and take care of him.

Dear Son never like swimming and it may be my fault. I don’t like water however my husband and I made the mistake of taking Dear Son into the hot tub on one of our weekend trips and he loved it. It wasn’t a bad thing, it was just that once he had a taste of that nice hot water, he wanted nothing to do with the cold swimming pool. His dislike for a cold swimming pool continued for many years. Every summer, they take the kids to the pool for summer school and every summer he’d shiver in the pool, his chest sunken in, his bony ribs making waves in his lily white skin and his baggy swimming trunks trying to find some meat on his body to hang onto. That was, until he met Mr. H.

Mr. H and Dear Son went together like peanut butter and jelly. He’d take Dear Son over to the deep area of the pool and let him float, while holding onto him. Dear Son would smile ear to ear, his face beaming in the sun, as if the sun were shining down on him, like a spotlight in the pool. Mr. H had a special spot in the pool, just for him and Dear Son. When he didn’t take Dear Son over to it right away, Dear Son would look at him, look at the spot and then give him a great big smile. It was great to see him so happy.

Soon the time was up in the pool. Mr. H and the two other male aides, lifted Dear Son out of the pool and into the wheelchair, taking him inside to get him dressed for the bus ride home.

I couldn’t help but think, as I saw the hundreds of children wheel out to their little buses, what it must have been like some forty years ago, for children like these. Many were placed into homes, away from the families they were born into, because they were severely disabled and it was too hard to care for them. As the little yellow school buses drove away, I couldn’t help but think of those children who were born in the wrong place and at the wrong time. I wonder if they ever had their day in the sun, with someone like Mr. H, who let them float the afternoon away or if they drowned their sorrows looking out the window at the other children playing in the swimming hole, if they even had a window to look out. I wonder too, if anyone visits them at the home, or if they just forgot about them after they admitted them, and went on about their normal lives. Sometimes, you don’t need to swim with the sharks to be eaten up by them.


Anonymous said...

Dear Son looks so happy in the picture! He was obviously having a blast! :)

I too, have often wondered what happened to those children who used to be "institutionalized" just a few years ago...

...are they still there? Does anyone go to visit them? I can't even imagine that places like that still exist...

Jo said...

Working as a social worker in the hospital, I sat and held an elderly patient's hand while she left this world for the next. Her family didn't make it in time. Later I would find out she was one of those "kids" you talk about. Her family felt like they didn't have any other choice for her in the 40's, but they never stopped regretting the placement and never stopped loving her.

Danielle said...

Wow. It sounds like you guys have a really neat program around there. And great picture too

Lisa - Mum to Mitch & Harry said...

Sounds like the perfect day. It made me ponder how blessed is your Dear Son to have such thoughtful and loving people in his life. And how there are many children without disabilities who are in dreadful situations and will never know the simple joy of splashing in a pool and being surrounded with love. Your post made me want to hug my little boys just a little bit harder.

Thank you for reminding me of what is important,
mum to Mitch & Harry
ex 24.6 weekers
now 2 1/2 years old

Heidirific said...

There are still institutions around the U.S (and in the state Dream Mom lives). I worked with some of the clients 8 years ago in my first job as a speech therapist. Some of my students in a later job also lived in an institution.

There is huge variability in the level of investment of families who have to place their children outside of the family home. Some institutions require a certain amount of family involvement/volunteering as long as the client is placed there.

Your post made me miss summer school (extended school year). It is an intense time but always fun. It was also nice to work half a day (the district that I worked for only went half a day in summer) and could go to the beach when done with work. The kids also loved summer school and it sounds like your son does also.

Anonymous said...

Dream Mom,

Your son is beautiful--he smiles the most amazing and dazzling smile for you. His love and devotion radiates from his happy, trusting face. He is so lucky to be blessed with such a loving mother dedicated to his well-being. Thank you for sharing his story and particularly his pictures, because no words would be able to describe his beauty.

Your blog has completely changed my thinking about the severely disabled. Not being able to speak or write doesn't mean communication or happiness is impossible.

Dream Mom said...

Thanks everyone for your comments. I do realize there is a huge variability in the amount of visitation and I also respect the fact that these are very difficult decisions for people to make. There simply aren't enough resources and options today,let alone years ago. I remember one class I attended some time ago, when one of the older mothers, discussed how she had to fight with the school district to get education for her daughter; back then, there wasn't any.

I still have a difficult time, imagining any child, being removed from the home they love and being placed in an institution. I feel for the severely disabled children and often feel they don't get the same opportunities that we give to the able bodied children, namely, getting to stay in their own homes. I often wonder, how you tell a child that they are going there and how you leave them there.

Danielle-Yes, we have a good summer school program that allows these children to have some fun. It takes a lot of people to care for these children and I am blessed to have programs like this to assist with that.

Mel said...

What a great program you have there! I loved reading your thoughts and feelings about this day.

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